Mast Cell Disorders Forum - Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?

Futurehope

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Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
11/15/12 at 08:36:46

I am currently on 2.5 Mg Xyzal (like Zyrtec), an H1 blocker in the AM

50 Mg Hydroxyzine HCL before bed (seems to help the IC) H1 blocker

Pepcid 20 Mg 2X/day H2 blocker

Singulair 10 Mg 1X on an empty stomach in the AM

Hydroxyzine HCL definitely helps my bladder pain. I have been on it for years. But, I am thinking it is contributing to my tiredness and/or sleepiness.

So........

If there are any IC/MCAS sufferers who have found help WITHOUT the Hydroxyzine HCL, I would like to hear about it. I will not take Elmiron. It caused hair loss for me.

Thanks in advance.

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PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You? Reply #1 - 11/19/12 at 14:29:18 My specialist told me to take my cromolyn for my IC. I was already taking it but he said it should help with the IC symptoms.
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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You? Reply #2 - 11/20/12 at 16:02:00 Is the drug called cromolyn sodium? The only cromolyn I saw on the internet said it was used for asthma? Your doctor's suggestion for its use for IC is interesting. Thanks.
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PamH

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #3 - 11/21/12 at 05:02:56

Futurehope,

Yes, it is the cromolyn sodium. I am on it for masto. Since they believe that IC is caused by mast cells, the cromolyn sodium should help with this disorder. However I don't know that they would put anyone on Comolyn FOR IC. I think you have to have a slew of problems before they put you on Cromolyn. Plus it is extremely expensive. My IC comes and goes and is not severe, so if it was he might have sent me to a urologist or something. I can somewhat control it by staying away from acidy foods and carbonation.
I was on Hydroxyzine but became unable to take it. I would take it at night to help me sleep! It is very sedating. When I went off of the hydrozyzine I started having all kinds of acid indigestion problems...I think it was the medicine controlling the histamines. It is a nice strong antihistamine. It really helped me too. I actually miss being able to take it.

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Pam

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Lisa

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #4 - 01/19/13 at 15:06:09

According to this research publication MCs and histamine are major factors in the pain.

RESEARCH ARTICLE
Mast Cell-Derived Histamine Mediates Cystitis Pain
Charles N. Rudick,

Paul J. Bryce,

Laura A. Guichelaar,

Ruth E. Berry,

David J. Klumpp mail

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0002096

There is also another article which I can't find at the moment by an Italian researcher who has found that ranitidine is the most effective antihistamine to treat pain in this region of the body.

Lisa

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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You? Reply #5 - 01/20/13 at 00:29:52 I believe I have heard of instillations. I do not want to do that. I thought you mentioned injections? That's different, isn't it?
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Riverwn

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #6 - 01/20/13 at 05:51:07

I have IC and I take both vistaril (works for brain fog too) and Ditropan (generic)--which soothes the spasms in the bladder and it works REALLY well for me

I would caution people here, that some of us with MCAD or SM have an hematopoietic effect when we react--which means we also have trouble with abnormal bleeding when we react. For example, I bleed under the skin on top of my arms. Other bleeding that can endanger someone is bleeding with diarrhea. Blood thinners can put us in great danger--we can bleed critically if we take those meds, then react. I refused to take coumadin (blood thinner) when I was in the hospital and the DR understood why and agreed.

It doesnt mean this will happen to everyone but you just need to be aware that it exists and be careful.
Hugs
Ramona

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Futurehope

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #7 - 01/20/13 at 08:41:52

Riverwn wrote on 01/20/13 at 05:51:07:

I have IC and I take both vistaril (works for brain fog too) and Ditropan (generic)--which soothes the spasms in the bladder and it works REALLY well for me

I would caution people here, that some of us with MCAD or SM have an hematopoietic effect when we react--which means we also have trouble with abnormal bleeding when we react. For example, I bleed under the skin on top of my arms. Other bleeding that can endanger someone is bleeding with diarrhea. Blood thinners can put us in great danger--we can bleed critically if we take those meds, then react. I refused to take coumadin (blood thinner) when I was in the hospital and the DR understood why and agreed.

It doesnt mean this will happen to everyone but you just need to be aware that it exists and be careful.
Hugs
Ramona

Good point about the blood thinner.

How much Vistaril are you taking (how many mg?), and how frequently? I am currently on this. It is one of the best for me, but I believe it causes me to feel like I have chronic fatigue syndrome, and this is after having taken the same dosing schedule for years.

I found out what hydroxyzine HCL is doing to me because I had stopped it at one point. I had a much better level of energy off of it, but the bladder pain became unbearable.

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Riverwn

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #8 - 01/20/13 at 13:46:27

I take 25 mg 3 times a day. Yes you are more alert without the vistaril but my brain fog is much worse without it and the IC gets worse too. For me the trade-off is worth it. This is another one of those situations where you have to judge by your own symptoms individually (and talk to your DR of course).
Hugs
Ramona

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Lisa

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #9 - 01/20/13 at 14:00:35

My urologist put me on an anticholinergic medication to help with the urgency I was having. It has helped a lot.

He did tell me that IC goes in flares and I've seen that this is true. I've been fortunate to not have much difficulty, but I did go through a flare in November which was very strong and took me by surprise how painful it was. My husband thought I was having a baby after I'd bent over and my bladder went into a spasm!!

Not at all a pleasant thing!!!

Lisa

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Futurehope

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #10 - 01/21/13 at 12:17:34

Lisa wrote on 01/20/13 at 14:00:35:

My urologist put me on an anticholinergic medication to help with the urgency I was having. It has helped a lot.

He did tell me that IC goes in flares and I've seen that this is true. I've been fortunate to not have much difficulty, but I did go through a flare in November which was very strong and took me by surprise how painful it was. My husband thought I was having a baby after I'd bent over and my bladder went into a spasm!!

Not at all a pleasant thing!!!

Lisa

I tend not to get spasms. I tend to get horrible burning, which can become bad enough to prevent sleep and keep me miserable.
I have been on 50 mg of hydoxyzine HCL taken before sleep for years. This dose keeps me from insane bladder pain.

Even better....in the past I have taken 25 mg with lunch in addition to the 50 mg at night, which really helped my bladder "recover". Trouble is, this dose really made me lose my memory and caused terrible sleepiness and tiredness....but my bladder felt great. So, on occasion, when I have no commitments, I'll take both the lunch and nighttime dose. But, if I need my memory and my life, I cannot stay on that dose.

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Futurehope

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #11 - 01/21/13 at 12:22:20

Riverwn wrote on 01/20/13 at 13:46:27:

I take 25 mg 3 times a day. Yes you are more alert without the vistaril but my brain fog is much worse without it and the IC gets worse too. For me the trade-off is worth it. This is another one of those situations where you have to judge by your own symptoms individually (and talk to your DR of course).
Hugs
Ramona

Do you mean, morning, noon and night......or 8 hours apart?

My urologist had suggested that a three time/day dosing schedule made more sense in keeping the level up in my blood throughout the day.

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Lisa

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Re: Interstitial Cystitis, MCAS Sufferers, What Medicines Are Helping You?
Reply #12 - 01/23/13 at 09:28:42

I haven't said much here cause I'm really not knowing much about this subject.

I personally can't see my using heparin for anything!! I've already got a history of hemorrhaging!!! I did this DURING surgery and right after it too!!! Having this history, the idea of using heparin on purpose scares me silly because what would happen if I were to use this and then go into a reaction due to something else? An example of this would be that of using a heparin SQ for treatment, injecting it in the morning, and then like today, I had a delivery of book bags come from a school book editor and it's FULL OF SILICONE AND PAINT!! It's got me reeling from the smells and reacting all over the place!! If I had a heparine injection, how would that double up with the MC reacting since I already have a history for hemorrhaging?!! It would take next to nothing to start bleeding out!!!

So, as interesting as it sounds, like always I say, CONSULT WITH YOUR DOCTOR!!!! And by this I'm not talking about the urologist cause he's definitely not going to understand the masto angle of this!! This requires the input of a masto expert to know whether or not this kind of treatment is viable.

My 2 cents anyway - for what it's worth.

Lisa

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Don´t forget, there is so much more to life than being sick!

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